Friday, December 14, 2012

A Season of Hope

I haven't had much energy left for blog writing the past two weeks, but the good news is that I have been using up all of my energy on some very worthy projects that give me a great deal of hope for all of us with ME/CFS and the future of our illness.

I was recently asked to join a fledgling organization called the National Advocacy Alliance for ME/CFS. Having been told for many years by the NIH (U.S. National Institutes of Health) that ME/CFS patients would have a much higher effectiveness if we banded together, a grassroots group has formed this Alliance and is moving forward aggressively on several exciting projects. It is a collection of existing state, regional, and other CFS-related organizations, including:

Plus several individual advocates, like myself, who have contact with a number of other patients (for me, through this blog and our growing online parents' group).

One of their first projects is an awareness poster that is almost ready for the printer. It features several different ME/CFS patients' photos, plus some information on the severity and symptoms.

To go along with the poster, they are working on some website text that all of the organizations above can use to go along with the poster and link to additional information. I was helping out with the editing on that this week.

The other exciting development is that the CDC (U.S. Centers for Disease Control & Prevention) is adding a new section to their website on pediatric CFS (finally!) and is actively seeking input from a wide range of stakeholders. Yes, you heard that correctly - the government is actually listening to input from outside sources! Yesterday, another mom, who heads up Speak Up About ME, and I had a teleconference call with several people from the CDC to give them input on what we thought was most important for their new pediatric webpage. They were truly interested in our input, listened actively and asked questions, and invited us to e-mail any additional information and resources we had. I was so excited after that phone call that I couldn't nap yesterday! Finally, they are listening to patients and parents, actively including us in the process, and moving forward to address the horrible lack of attention to pediatric CFS. After my unsuccessful nap, I spent another 90 minutes writing up my suggestions, with links to more information, for the treatment section of the pediatric webpage.

So, that is why I am so exhausted and lacking in time or energy for more writing! But I am filled with hope. All of our advocacy efforts - letters, awareness campaigns, donations, testimony at CFSAC - is all beginning to pay off. Things are moving forward! In addition, for several years now, we have seen significant movement forward in ME/CFS research - with more and better studies rooted in hard science digging into the mysteries of our illness.

It just all fills me with a tremendous amount of hope for our futures. This entire landscape has changed dramatically from when I first got sick 10 years ago. Then, the government was paying almost no attention to CFS, patients were not involved at all, and the few research studies being done all seemed to focus on psychological issues. True, we still have a long way to go before all medical professionals know how to effectively treat ME/CFS, but we are making progress and moving forward!

And now, with most of my obligations finished, I can finally turn my attention to the holidays and my family. Wishing you all a season of hope and joy!

Hopefully Sue noted that first and foremost pediatric patients should not be diagnosed using adult criteria.

Experts in pediatric CFS developed a pediatric definition several years ago. Unfortunately, much of the research done on CFS in children and adolescents uses adult definitions which then makes the research even murkier.

Yes, we told them that use of the Pediatric Case Definition was one of our top priorities. They were very interested and said they will follow-up and ask about its use when they interview the CFS clinicians whose input they are also seeking (we gave them the names of all the top CFS docs in the country).

They are limited in referring to outside information - federal guidelines only allow CDC (and other agencies) to reference other federal agencies' websites (like DOE) which is limiting but does make some sense since they figure that is all they have control over wrt content, accuracy, being update, etc. However, they can link to published studies and the Pediatric Case Definition was published in a peer-reviewed journal, so that helps a lot.

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.